While I'm glad there is a day devoted to this, I don't really need the day. I need a cure. I need proper medication. I need people to understand this disease better. Yet, since this is a slow process, I will go ahead and take advantage of the day and of having this blog to post information about RA. My most favorite thing I need people to understand is this (taken from Rheumatoid Arthritis Warrior's blog):
Rheumatoid Arthritis (RA) has an ill-fated name. Things sometimes do: spaghetti squash is not pasta; a hot dog is not a dog; we park on a driveway and drive on a parkway.
“Rheumatoid” is a reference to rheumatic fever which is not at all related to Rheumatoid Arthritis. The word “rheumatic” comes from an ancient Greek word for “flow,” which reflects a primitive understanding of medicine. By the eighteenth century, a similarity was noted between the painful symptoms of rheumatic fever and those of what we call Rheumatoid Arthritis.
Of course, we all know what “arthritis” means: literally, inflamed joints. Technically, Rheumatoid Arthritis is completely unrelated to the condition most people call “arthritis”: osteoarthritis.
Doctors call osteoarthritis by that name now so that it can be distinguished from Rheumatoid Arthritis and many other diseases using that word. Some do refer to Rheumatoid disease or autoimmune arthritis, but that can also refer to Lupus, Ankylosing Spondylitis, Juvenile Arthritis, or Psoriatic arthritis. Maybe we just need a better name for Rheumatoid Arthritis.
Likewise, a CNBC article states that "one goal of this initiative is to overcome the misconception that rheumatoid disease is a form of arthritis. While the disease usually affects joints, the disease process is not the same as osteoarthritis. RPF founder Kelly Young points out, 'joint inflammation is a prominent symptom of this disease for most patients, but it's a disservice to refer to it as merely a type of arthritis.' She explains, 'Just today a patient posted about the severe effects of her rheumatoid lung disease, saying her joints feel better than they have in years.'"
It's obvious that even many doctors don't know the difference between osteoarthritis and RA, and therefore they cannot possibly understand it - or me! At my most recent OB/GYN annual exam, my doctor told me that the diagnosis must be wrong because I'm "too young to have arthritis." Clearly, he doesn't know what I know, doesn't read the literature or know others who are even younger than I am and have RA, and doesn't know to leave the diagnosing of such diseases to the rheumatologists. (As Sam put it - so eloquently - after I told him what the doc said, "He wouldn't want rheumatologists diagnosing placenta previa or ovarian cysts, would he?")
Living with RA on a daily basis often feels like Groundhog Day. Every day I wake up, wondering what my prognosis will be for the day. Will my jaw open? Will my knees hold me up? Will my elbows straighten? Will my wrists give out? Will my fatigue and swelling hold out long enough for me to enjoy my day with my boy? Will I be able to pick Banner up from his crib with ease, or will I have to muster enough courage and strength and willpower to just suck it up and endure the pain in my wrists and/or elbows? Will I be able to get on and off the floor - at Mommy & Me, at Storytime, at our play group - without completely embarrassing myself? Will I be able to get off the toilet seat with ease, or will my knees be so weak or swollen that I'll have to use the counter, doorway, or door for help off the seat? Every.single.day I have to wait to know how my day will go, wondering how much longer this nonsense will persist. Needless to say, I'm hoping for an early spring!
One of Sam's favorite things to do on Groundhog Day is watch Groundhog Day, the movie. In the film, the main character must relive the same day over and over again. This is just like RA, in that the same things happen over and over again. My body is constantly fighting the same war. My mind is constantly battling the same issues. And, medicine after medicine doesn't work. And, I wish more people understood the disease, as I'm having the same conversations over and over again... although I'm THRILLED when people want to learn, to understand, to become aware, so that part I don't mind so much.
Anyway, in the hopes that you might want to learn more, I'll leave you with some further reading about RA, if you are so inclined to "celebrate" this day of awareness.
-What is RA, Anyway?
-Difference between RA and Osteoarthritis
-Basic RA Facts
-RA Awareness Day
-Previous posts on my blog about RA: here, here, here, and here.
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